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Recently diagnosed, Assistance with terminology.

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sampy661
sampy661 Member Posts: 36
edited May 2021 in Just Diagnosed

Hello.


I recently received a wide local excision and sentinel lymph node biopsy on my right breast. Final report reveals I have invasive cancer.

Notes as follows:

TNM Stage Classification: pT2N0 (sn) Mx

ER: Positive. 2+ to 3+ staining 90% of cells.

PR: Positive. 2+ to 3+ staining 80% of cells.

HER2: Negative (1+)

Ki-67: Approximately 40%


LYMPH NODES: One lymph node with no evidence of metastatic tumour.


Margins:

Invasive tumour: 0.9mm from superior, 3.5mm from medial, 5mm from superficial, 8mm from lateral, 10mm from the inferior margins.


Here is the apparent controversial area according to my breast surgery team, two out of three surgeons felt I don't need further surgery but one preferred I have an additional surgery due to my DCIS margins before chemotherapy. An additional surgeon wants me to have chemo than an MRI and no further surgery yet.


DCIS: <0.1 from deep and superficial, 0.5mm from superior, 1.5mm from lateral, 3.5mm from medial and 5mm from inferior margins.


The surgery team want my decision tomorrow at latest. I realise this is a forum and the decision is mine, personally I don't wish to have additional surgery but I wouldn't mind your opinion?


additional information:

HISTOLOGICAL TUMOUR TYPE: Invasive carcinoma of no special type

GRADE: 3

SIZE OF INVASIVE TUMOUR: 33mm

WHOLE SIZE OF TUMOUR (INVASIVE +DCIS) 60mm

EXTENT OF TUMOUR: Focal

ASSOCIATED DCIS: Present. Intermediate and high nuclear grade solid and comedo types

ASSOCIATED LCIS: Not identified

PERITUMORAL LYMPHOVASCULAR INVASION: Not identified


MICROSCOPY

Tumour cells show moderately pleomorphic, hyper chromatic nuclei and eosinophilia cytoplasms and frequent mitoses. The BRE grade is 3 (tubules 3, nuclei 2, mitoses 3, with 25 mitotic figures identified within 10 high piwer fields).


it's a little confusing, the terminology is way beyond my pay grade, um, I guess I don't understand why chemo is so strongly recommended, one surgeon said my age (48) and superior fitness levels suggest I'm a good candidate for chemo, radiation and hormone therapy since I'm so active and healthy.

My concern is, won't all these procedures kind of destroy my health? Um, I'm a little anxious, I have been told my cancer is “favourable" and that I'll be fine - interesting

So, I mean, what do you guys make of the report. I read a lot about side effects from chemo and tamoxifen, although I don't know what sort of medicines I'm to receive yet. My palms are sweating, if you know what I mean.

Anyway, I'd appreciate any input.


Thank you.

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Comments

  • kathabus
    kathabus Member Posts: 45
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    Hi....ok.....so let's talk this out. So when you say "surgery team"....who does that involve? You should have a proposed treatment plan and the reasoning from an oncologist. And maybe a second opinion from another oncologist if you feel you need one.

    Second.....are you getting the Oncotype Test done on your tumor to help decide on chemo?

    Let's start there.

    EDIT: With regard to the surgical margins....<.1 seems like not enough....I had <1mm and my surgeon had to take out more. But if 2 out of 3 said it's ok....they're more qualified than me. What were their reasonings?

  • sampy661
    sampy661 Member Posts: 36
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    Thank you so much for your quick response.

    The three surgeons I’m referring to consist of the Head of Breast surgery, he thinks I should refrain from additional surgery due to new information regarding margins.

    My actual surgeon who performed my wide excision and node removal last week. He wishes for me to begin chemo and then have an MRI to further investigate margins before committing to surgery before chemo.

    An a third surgeon, who has decades of experience was preferring I have additional surgery due to my close DCIS margins before commencing chemo.


    I won’t meet the oncology team until another two weeks, hence why they want me to decide ASAP on whether I have additall surgery now or not.

    The Oncotype test is approximately $5,700 in Australia and I’m going through the public health system and it’s a little pricey for me.





  • moth
    moth Member Posts: 3,293
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    ok, so you have a couple questions here.

    The first is a *close margins* question.

    This does vary from facility to facility & a bit among surgeons. In my province, a close margin is <2 mm & we don't differentiate between DCIS and IDC. If there's any DCIS or IDC in that margin, it's a close margin. There are a couple options based on other factors: re-excision, or a radiation boost to the bed.

    If you think you absolutely will decline chemo, then definitely you'll want a re-excision.

    Now the second question in your post about WHY they're suggesting chemo etc:

    Here's the thing about breast cancer which has probably not been well explained. We can cut out the tumor from the breast. And for many women, that's it! They're fine. BUT we cannot tell if individual cells have already seeded themselves elsewhere in your body. And if they do, that's a fatal diagnosis. That's stage 4 metastatic breast cancer and there's no cure for that. SO yes, chemo & rads can affect your health, but they give a survival benefit (if they don't, such as with a low oncotype score, they're not prescribed). The whole point of chemo & radiation is to reduce the risk of a metastatic recurrence. Favourable is a guess - we never know how an individual will fall on the statistics. I went from Stage IA to stage 4 in a couple years....

    but back to those close margins - you DO NOT need to give your surgeons an answer tomorrow. It's not an emergency. Timing of re-excision can be delayed after you talk to a medical oncologist, after you get Oncotype scores back, after you discuss whether you will do radiation and hormone treatment etc. Just call them and say you will decide about the close margins after discussing with your medical oncologist.



  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    You really need to discuss the chemo question with a medical oncologist, not a surgeon. The Oncotype test could be really useful here. Small tumor size, negative sentinel node, and ER+PR+ Her2- is favorable, but grade 3 and Ki67 40% (quite abnormal-looking and fast-growing) and your age (premenopausal I assume) are not.

  • moth
    moth Member Posts: 3,293
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    "Re-excision should be carried out prior to adjuvant radiation but does not need to occur prior to systemic therapy." This is from the BC Cancer Agency clinical guidelines

  • moth
    moth Member Posts: 3,293
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    Ok, reading your post now that you probably won't get the Oncotype I'd probably say re-excise it now. Then do chemo, rads & hormone therapy :) I'm a 'throw everything at it" kind of gal

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,042
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    Shetland,

    The op said she would have to pay approximately $5700. for an Oncotype test in Australia, which is unaffordable to many, many people.

    I agree that with respect to a treatment plan, a medical oncologist is the person to see. Surgeons, regardless of their specialty or experience may have an opinion but oncologists drive the treatment plan

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    A 1mm margin is not usually considered acceptable when the diagnosis is pure DCIS. On the other hand, no cancer at the inked margin is considered sufficient for invasive cancer. If your diagnosis is primarily IDC with just a little DCIS, the 1mm margin is likely sufficient then. But if there is a large area of DCIS near the margin, personally I would err on the conservative side and insist on the minimum 2mm margin.

    Margins in Breast Cancer: How Much Is Enough? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58948...


    I don't think medical training is different in Australia, which means that surgeons are trained to operate and Medical Oncologists are trained to decide on chemo and other treatments. Of course it could be different there (but I don't think it is) but in North America, often surgeons offer an opinion on chemo, but it's never their job to make the final recommendation. So if your surgeons are saying that chemo is necessary, I think you have every right to insist on seeing a MO prior to deciding.

    If the MO appointment can't be moved up, one option is to have the surgical re-excision for the DCIS and then see the MO, prior to deciding on chemo.

    My guess is that it's the Ki-67 and the grade that is driving the chemo recommendation.

  • FrackingHateCancerMPBC
    FrackingHateCancerMPBC Member Posts: 33
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    Hi there,

    If your margins are not adequate then wanting to do the surgery right away to fix that is standard. I wouldn't mess around with surgical margins. Who did the surgery? Another surgery only delays chemo by a few weeks. Correct? I would say that your first surgery is your most important intervention with breast cancer and probably the easiest part of the whole process. It's a lot of gain for little suffering and time. I myself would get it done first. I would at the very least ask the guy who did my surgery why are the margins even looked at if when we don't clear them we don't go in and fix that right away? I mean they have to draw the line somewhere. They drew the line. They missed the line. So they need to do a quick redo.

    The thing about being healthy enough to do chemo means just that. Some people are too sick to take much chemo. It's not a good thing. It is what it is. Just because you are healthy enough for chemo does not mean you don't do all the necessary surgeries. These things are not mutually exclusive.

    Bowing out on additional reconstruct surgeries is one thing. I bowed on reconstructs myself here and there. Ended up doing the fat graft. Noone loves the knife, but the primary intervention surgery is key. I'd get it done or at least have the conversation with the surgeon. Being young and having a life I was diagnosed at 47, means you want to do everything to assure your survival.

    Then you move onto the Chemo questions you might have and have those conversations. Or Radiation. Not sure which order you are doing it in. I did all three. I think a lot of people do all three. If I was only to do one it would have been the surgery of course, and I would want it done right, with good margin clearance to give the best possible chance of NOT having a reoccurrence. I had great clearance and I've had no reoccurrence. That is anecdotal of course but maybe it helps you to hear it in some way. Strange that three doctors at the same hospital don't all have the same opinion. I did three separate hospitals and they all had the same opinion, but I didn't wait. My tumor was out and my margins were cleared before I got the third opinion. I just wanted all the info out there. Or my mom did really, so she laid down $1000 to have UCSF give an expert third opinion. I hope things turn out well. Great job handling all this! Smart of you to reach out as well. I'll let the other positive receptor people comment on hormones, I know nothing about the hormones because I'm triple negative.

    Have a great day!

    - Frack

  • sampy661
    sampy661 Member Posts: 36
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    Wow, amazing responses, so thoughtful and I appreciate the links too. I'm taking it all in and now I'm almost, almost angry as to why my surgical team didn't assuage my angst by just going back in there, rather then letting me stew in confusion? Perhaps I was a little too stunned to speak after my results were revealed.


    I'll be endeavouring all therapies, chemotherapy , radiation and hormonal as per their recommendations - I reckon I'm tough enough to handle it, however I've also decided to undergo further surgery - if anything for my peace of mind. Thank you all for your indulgence, it's so very, very appreciative

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Sampy, are you post-menopausal? If so, the Prosignia test might be an option - it's less expensive for you in Australia than the Oncotype test.

    Gene profile tests https://www.bcna.org.au/understanding-breast-cance...



    Comparison of the Performance of 6 Prognostic Signatures for Estrogen Receptor–Positive Breast Cancer
    https://jamanetwork.com/journals/jamaoncology/full...



  • sampy661
    sampy661 Member Posts: 36
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    I’m pre menopausal, I’m actually pretty regular.

    I wasn’t aware of any tests or at least wasn’t offered any? Possibly due to going through the public health system, not that I’m begrudging the care I’ve received, it’s been incredible.

    I’ve spoken with my breast cancer care nurse (for an hour) and she’s arranging for me to discuss matters further with a radiation oncologist since I have so many questions after all the input I received in this forum.

    As for further testing, it’s interesting that I’d gladly pay $7000 for a new camera but I’m irked at the thought of paying money for breast cancer testing.

    I guess I’m still in a bit of a daze about it all, I’m trying not to worry, when I read Moth’s prognosis it humbled me and realised I need to calm my mind down and ask questions to my care team instead of nodding my head. Things could have been worse.

    Thanks for the links you’re all sending, they’re great. I’ll be sure to inquire about additional testing during my appointment.

  • salamandra
    salamandra Member Posts: 745
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    I totally get not wanting to pay money for more testing. I think it's very personal.

    It's really about knowing yourself. Would you feel ok foregoing chemo if you knew there was a chance that the oncotype test could say it would make a big difference to survival? Would you feel ok about going through chemo knowing that there is a chance that your oncotype could come back low and you were not getting benefit and maybe even getting harm? On the other hand, might you be ok with knowing that even the oncotype is a developing technology with developing data, with no guarantees, and maybe you will feel confident and comfortable following your doctors' best judgment, backed by years of experience.

    I think the more on the fence you are about chemo, the more I would consider the oncotype. If you have full trust in your docs' judgment, it's not so relevant. But if you are second guessing them or are worried you'd have regrets down the road, it might be worth the money.

  • sampy661
    sampy661 Member Posts: 36
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    Hi Salamandra, good timing.

    I just arrived home from the consult with one of the “juniors” from the breast surgery team and my breast cancer care nurse.

    To preface, when I initially arrived for my consult two days ago to learn about the results of my wide excision and node removal, I was informed by another “junior” surgeon I won’t be needing chemo or radiation. You could imagine my relief.

    30 minutes into the meeting, the head of surgeon arrives and apologises for his delay then takes over the discussion and begins to discuss chemo and radiation, I quickly informed him he has me confused with another patient.

    You can imagine the change of atmosphere in the room.

    This morning during the consult with yet another “junior” surgeon and my breast cancer care nurse, I lost my shit. After two days of anxiety, confusion and a little fury, I exploded. Told them I’m not having chemo, do whatever you think is best for me, I’m not having chemo.

    There was significant panic between the junior and the breast cancer care nurse and I was told to at least speak with the oncologist which is scheduled for the first of June before I make any final decision, though it is my decision.

    I’m pretty much back to my old self right now. At the moment I’m avoiding chemo, I honestly don’t care what any tests reveal, I’m still pretty pissed off with the initial information I received about not needing chemo or rads to hearing “you’ll be having chemo and radiation”

    I warned my breast cancer nurse if I’m seen by a “junior” oncologist, I’m walking out and seeking service elsewhere with the help of my GP. If I have to go private, I’ll do so and pay my way and yes, an oncotype test may be exactly what I need. Let’s not be a tight arse about it, I have the money.

    I know I’m ranting here, I need to get it out.

    Incidentally, my breast cancer nurse informed me, I’m to have the chemo, apparently 3 months, every 21 days - then an MRI and depending on the results of the MRI, further surgery, then radiation and a hormone treatment.

    I’m not committing to anything right now - I need to calm down, let this fury fade

    once again, thank you for listening and offering your opinions, I’m in a much better place today then I was yesturday.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Sampy, omg, I really feel for you. I had a similar experience. After my lumpectomy and sentinel node biopsy, I went for an appointment to hear the results. I knew a lot of my prognosis and my treatment plan depended on that node. So the resident (maybe the same as a junior? It's a doctor getting trained in a specialty) looks at his computer for a moment and says, "Hmm, so your sentinel node was negative..." I start crying and hyperventilating from the relief. Then he says, "Well, there were isolated tumor cells in the node..." Wait, what?? I looked at him intensely and he squirmed for a moment then went and got the actual surgeon. Looking back, it still makes me angry. It was a trauma that did not have to happen. For heaven's sake, giving a new, scared patient important results should not be delegated to juniors who don't know what the hell they are doing. See, I'm angry on your behalf, now.

    I think you are wise to not commit to any plan right now. How can you, when you have not had a chance to talk to someone who actually can give you an expert opinion? And give you an opinion they must. It is not fair to say, "It's your decision". They are supposed to explain the options, hear your input, and say what they would recommend and why. You deserve to know WHY so you can make good decisions. Is there a tumor board involved here? With that arrangement the surgeon, medical oncologist, radiation oncologist, nurse, pathologist, etc. all meet together in the same room to discuss your case and come up with a treatment plan for you. This is a good way to do it.

    I think Salamandra's comments are right on.

    If/when you want to discuss further, we are here.

  • moth
    moth Member Posts: 3,293
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    I think getting conflicting info is stressful but I'm not quite understanding the vehemence against chemo at this point.

    Without an Oncotype to tell us otherwise, here it would be standard of care given your age & the clinical presentation. You can run your numbers through the Predict calculator & see the survival benefit from chemo at 5,10 & 15 years https://breast.predict.nhs.uk/tool

    The thing is, whether it's because team members don't have all the info or the clinical picture changes, sometimes treatment recommendations change. In 2017/18 my treatment recommendations completely changed when they redid my tests and decided I was triple negative. Other members here go in thinking their nodes are clear and come out of surgery with a final staging that is completely different due to large number of positive nodes or a much larger tumor or a different grade of tumor than at biopsy. It's the shitty reality of cancerlandia

  • 2019whatayear
    2019whatayear Member Posts: 468
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    I'm sorry you are going thru this. You are not alone in that many of us heard one thing initially and then post-surgery with that pathology everything changes.

    W/O doing an oncotype test, Ki-67 of 40 plus Grade 3 plus being premenopausal is going to have any Medical Oncologist recommend chemo. Fast-growing cancer cells are the ones that chemo works best on.


  • sampy661
    sampy661 Member Posts: 36
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    Heck, I love my chances of survival using the predict tool, is this a good tool? I mean why would I have chemo or radiation, I’m better off on tamoxifen or 10 years, even 5 years on tamoxifen are some glorious odds after 15 years.

    Why am I so disenchanted (is the word I prefer) towards chemo, this is a gut feeling, predominantly. My instinct tells me I’m up for more drama from chemo than I otherwise would be and I stress, this is purely instinctual, I have nothing else to base this on. Others would call me reckless and careless and I’m coping a bit of that now, but it’s how I feel. In fact radiation is becoming equally thwarted with unacceptable side effects the more I read.

    I’m recently diagnosed, I’m still coming to terms with my diagnosis. I may chop and change my decisions from day to day but there’s one thing I know and that’s myself. I’ve yet to meet with my oncologist and who ever will be conducting my radiation, naturally I will hear them out, they are the experts.

    I live a very comfortable life, I have virtually no responsibilities having chosen not to have children, it’s just my husband and myself. He’s a big strong boy and will live with whatever decision I make. I have no other family, so I don’t have to consider anyone else’s feelings.

    I’ve had all four of my wisdom teeth removed, a filling and a root canal, that’s the extent of the surgeries I’ve had my entire life. At 48 I can do 16 push ups and 6 chin ups, I’ve squared 102 kgs for 3 reps (granted that was over 15 years ago) and I can jog 10km pretty comfortably.

    I’m physically strong, I’m mentally motivated, but I’m emotionally rather weak I feel. If the quality of my life was adversely impacted by either chemotherapy or radiation to the extent, that I felt I wasn’t the same person as I was before breast cancer - I’d never forgive myself. I’d be perpetually angry, bitter and resentful because I didn’t listen to my instinct. I know me better, than any doctor, surgeon, expert etc. I want to grow old and die gracefully, not become a slave to my side effects.

    Despite all my melodrama, who knows, next week, I may feel differently.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Sampy, I was also premenopausal when first diagnosed, and had never had surgery or any big health issue. I was very scared. I needed my husband to hold my hand for blood tests. Look at me now. I'm a total badass. Just saying don't underestimate yourself. And don't overestimate possible problems -- be careful where you get your info, and recognize that people without problems are less likely to post. Understand basic statistics and how they do and do not apply to you.

    Back when I was diagnosed, the standard of care for me after lumpectomy and radiation was tamoxifen. Now the results of the TAILORx trial would say I should consider chemo because of young age. If I could go back and take that chemo I definitely would (or at least ovarian suppression). Then I might not be on treatment for (my shortened) life, and I might get to grow old with my husband.

    Who knows next week. Keep an open mind and keep learning.

  • moth
    moth Member Posts: 3,293
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    I was hoping to get old and die gracefully too. I won't get old.

  • sampy661
    sampy661 Member Posts: 36
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    Gosh you wish you had chemo? Interesting, I guess I have a good starting point hmmm.

    I’m mostly reading this thread https://community.breastcancer.org/forum/6/topics/868199?page=2

    Moth, I don’t know hat to say, kind of crushing to read you predicament

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Sampy, when I input the info you've provided into the PREDICT model, with 5 years of Tamoxifen, I come up with a 15 year survival rate of 68%. Adding 3rd generation chemo increases the 15 year survival rate to 76%. Is that what you are getting? Everyone views risk and benefit differently, so the question is whether an additional 8% chance of surviving 15 years (and likely into old age) is worth the risks and side effects from chemo.

    PREDICT is an excellent model - my oncologist referred to it - but it is obviously not as accurate for any one individual as an assessment of the genetic make up of their own cancer cells, which is what the Oncotype test does.

    As for the thread you've been reading, it's important to keep in mind that people who are unhappy and who've had problems will post and complain. People who haven't had problems are off living their lives and are not posting. So that thread is hardly representative of the experiences of most people.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Well, yes, because maybe if I'd had chemo in 2011/2012, I would not have had a metastatic recurrence to my liver in 2014. I'm already an outlier having lived 6 1/2 years with liver mets, and I don't know how long my luck will hold out. I'll try to paint the picture: When you have metastatic breast cancer, and you want to live, you play whack-a-mole, one treatment after another. I have been on four chemos, three anti-estrogens, four targeted therapies. I spend three to five days per month at the cancer center. Blood tests, injections, infusions, pills, scans. Seven endoscopic procedures under anesthesia. Hospitalized five times. Three liver biopsies. From all this I manage fatigue and other side effects. But I do it because I love my life! I love my family!

    Ya, that is a scary thread. Maybe expand your reading a bit? One thing I will say about chemo for early stage: From what I've seen, you get through it and it's over, usually without any permanent side effects.


  • sampy661
    sampy661 Member Posts: 36
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    Hi Bessie


    I have 86% survival surgery only, 90% surgery + hormone therapy 5 years

    I have 68% survival surgery only, 76% surgery + hormone therapy 10 years (84% with hormone for 10 years)

    I have 70% treatments already received then 72% 5 more years of hormone therapy 15 years?


    Adding chemo has a better outcome but only, what 7% extra on 10 years hormone therapy - doesn’t seem like much?


    I put in NO to DCIS only

    48

    No menopause

    ER - positive

    Her2 - negative

    Ki-67 - positive

    Tumour size - 33 mm

    Grade - 3

    Detected - symptoms

    Positive nodes - 0


    Jesus Shetland, you’ve been on chemo four times? Okay, interesting, I don’t want to say too much in case I scare you. Hmm, well I do have the oncologist appointment on June 1st, we’ll have a listen to them, see what we can do to avoid having more chemo down the track. Thanks for sharing! If you’re still going strong after that much chemo how bad can it be


  • olma61
    olma61 Member Posts: 1,027
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    i will just chime in quickly to say - not everyone gets all the possible side effects of any drug, including chemo.

    And some chemo drugs are “worse” than others

    I have no lasting side effects from chemo, I did six months of Taxol plus my targeted therapy and it really was not that bad at all. I exercised and did all my usual activities throughout.

    I started chemo on my 60th birthday and am most likely less fit than you are : )

    As was stated, people who’ve had problems are more likely to be posting about them online.

    Good luck with your treatment, whatever you decide. Take care.

  • salamandra
    salamandra Member Posts: 745
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    I think anybody would be upset and frustrated getting different advice from physicians on the same damn medical team!

    At this point I absolutely think it is worth investing time/money/effort into getting at least one solid second opinion from a completely outside source that you respect. And I think I would encourage you to shell out for the oncotype or mammaprint if that's more easily available. Of course it's easy to spend other people's money, but reading what you've written here, I think that long term you will feel better about a decision made with all the available information.

    When I was first diagnosed and reading about all the side effects of treatment, I had a lot of skepticism too. I actually asked a doctor friend to help me research and understand why radiation was standard of care when it seemed so fraught. To be honest, the more reading I did, the more I realized that these things have become standard of care because of a LOT of solid experience and science. It is not a low bar to clear. It doesn't mean that recommendations will never change, and it doesn't mean that a good outcome is ever a guarantee for any particular individual, but I feel confident (as confident as a reasonable layperson can be, I guess) in saying that current standard of care treatments for breast cancer really are good medicine. Individuals may have individual reasons why they need to end up diverging from those standards of care, and that's why it's so important to have a good medical team. But I really think it should be everyone's default starting point.

    The thing is that the stakes are pretty high.

    I ended up with a relatively low risk diagnosis, as these things go. But hormonal therapy was standard of care and recommended for me. It was hell. I personally had difficult side effects with tamoxifen (for many women it's a sugar pill). Honestly I surprised myself with how long I stuck it out, trying different brands and dosages and timings, etc. I had kind of assumed I'd give it a shot and give it up if the side effects were too rough. But I realized that I want to live and I want to live well.

    I watched my mother die of metastatic breast cancer. I have a glimmer of the amount of stress and impact on life even for women with stage 4 who are in remission/having apparent success with treatments. I know that if/whenver cancer comes back in my breast, there's a chance it'll make it out into my body before I can catch it and have it removed. I know from experience that even when my diagnosis turned out to be not so bad, the process and waiting and unknowns were so incredibly stressful. I don't want to go through that again if I can help it, and it turns out I'm willing to deal with a lot more side effects than I thought.

    (Luckily I was able to do some research and talk my doctor into letting me try a different SERM that we were both comfortable with, and it's been much more tolerable for me. At some point, I think I would have been ready to give up on the treatment and take my chances, but that point turned out to be a lot further along than I ever would have guessed about myself).

    I hear you loud and clear when you say that for your long term mental and emotional health, you need to feel confident in your decision and not feel pushed or pressured or anything.

    I think that makes it even that much more important to really fully open your mind to the possibilities of treatment (chemo and radiation), investigate, research, read, consult second/third opinions, and gather data. I totally get the knee jerk reaction against drastic treatment, I had it also. But I think that the body's knee jerk reactions are not that useful for things like this. Our bodies evolved to have crystal sharp life saving instincts for dealing with immanent threats in the wild, not for evaluating and making predictions about complex microorganisms and their long term actions. Take that knee jerk first response as one piece of important info and data, but to me, it is less that is is valid data about the actual benefit of the treatment, and more that it is valid data about what YOU need to do to make your decision and feel good about it. It's telling you that you need to step back, take your time, gather the information, etc. Some people might be happy to go along with their first docs recommendations and would prefer not to make it their own research project. Your knee jerk reaction is helpfully telling you that you are not one of those people.

    Anyway, there is no right or wrong, because none of the science is perfect and every individual is different. To the extent you can, my advice to you is to try to focus on the process that will help you feel in alignment/integrity with yourself, because we have so much more control over the process than over the outcome. If you have access to a social worker with background in breast cancer, I found that to be an amazing source to get resources, bounce thoughts off of, and think out loud with someone that I trusted to handle all my dark thoughts without me needing to take care of them, and to have her own useful perspective on it. Really, social workers can be absolutely incredible. Your health center might have one. I found one through Sharsharet, which is a US-based organization but they may be able to help you anyway or help you find someone who can. They are a Jewish organization but they serve everybody.

    I was lucky not to have to consider chemo, so I can't really put myself in your shoes. But when I look back, even at the hell of the tamoxifen process, I think that the mental/emotional aspects of my experience were more strenuous than the physical. From my reading, I think this is true also for at least some women who do undergo chemo.

    Good luck! Heart

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Sampy, ah, the difference in your PREDICT inputs and mine is that your cancer was symptomatic. That unfortunately negatively impacts the results - the figures that I got from PREDICT for 15 years (assuming that screening had found your cancer) are now the 10 year figures based on your cancer being symptomatic.

    Since you are 48, to my way of thinking, the 15 year figures are the only ones that are relevant - you will only be 63 in 15 years, that's a bit younger than I am now. And for those who survive 15 years, the odds at that point of long-term survival (dying in your bed at the age of 92) are probably about 90%. So the 15 year survival stats are more reflective of the life-long survival stats, i.e. will you survive this diagnosis?

    At 15 years, PREDICT indicates 52% survival with surgery only, 65% survival with 10 years of hormone therapy, and 74% survival with 3rd generation chemo. So having chemo now for this diagnosis will give you approx. a 9% greater chance of living a long full live. Only you can decide if that amount of survival benefit is worth the risk of side effects from chemo, keeping in mind that the side effects might be minor/manageable and most are temporary but there is a chance of more severe and/or permanent side effects.


  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Sampy, I've been reading your posts over, and there are a couple of things I want to comment on. As you've said, you are newly diagnosed and still processing your diagnosis. I think that there are things about a diagnosis of breast cancer that you have not yet internalized, and your focus is more on the treatment and your good health than on the disease.

    • My concern is, won't all these procedures kind of destroy my health?

    Your health, as you knew it, is out the window. You have cancer. A fairly large, seemingly rather aggressive cancer. Your good health, as you knew it, came to a stop on the day you were diagnosed. For the rest of your life, regardless of your choice of treatments, you will be someone who has had cancer. This is now part of your health record. What it means is that there will always be a risk that the cancer might return. And it means that you might experience side effects from the treatments (not just chemo but also hormone therapy; even surgery can in rare cases have last side effects). That's not meant to scare you. The fact that you are physically strong and otherwise healthy is good news in that it means that you will hopefully bounce back from this diagnosis and whatever treatments you have. You will hopefully again be fully healthy and physically strong and able to do everything you can do now. But your health is no longer what it was and your health history and the risks you face moving forward have forever changed. The past is no more.

    • I want to grow old and die gracefully, not become a slave to my side effects.

    As do we all. The dilemma is that it may not be an either/or. Based on the PREDICT numbers, without treatment your odds of 15 year survival are 52%. You increase your chances of growing old and dying gracefully by 22% to 74% (over the next 15 years) with the combination of 10 years of hormone therapy and 3rd generation chemo. So treatment increases your odds of growing old by over 40% (74% vs. 52%), but those treatments come with side effects. With luck the side effects will be manageable and not severe and not permanent but there's no way to know.

    • Jesus Shetland, you've been on chemo four times? Okay, interesting, I don't want to say too much in case I scare you.

    I'm sure ShetlandPony will be here to reply, but from your comment I don't know that you appreciate that when someone is diagnosed with metastatic cancer (Stage IV), in most cases treatment (often intravenous or oral chemo, plus other meds) is continuous for the rest of your life.


    To repeat what others have said, because you are struggling with this decision, and since it appears that it would be affordable for you, I think it really would make sense to have the Oncotype test. PREDICT is good, but it's a generalized model; it's not specific to you. Your Oncotype result will be specific to you, particularly when enhanced with the RSClin model, which takes your Oncotype score (determined based on a 21-gene assessment of your cancer cells) and incorporates your age and tumor pathology. If you want to know what your mortality risk is with and without chemo, the Oncotype score plus RSClin will tell you. And that really is the best information to have to make this decision.


  • moth
    moth Member Posts: 3,293
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    ^^ everything that Beesie said 1000%.

    also, nothing you can say about chemo would scare me. I've been on chemo continuously since March 2020. Chemo is the only thing keeping me alive. I say "chemo is LIFE" : for early stage at high risk of recurrence, it is the best chance at a long & otherwise uneventful life & it's your one shot really at kicking this cancer out for good; for Stage 4s, it's our lifeline. When Stage 4s run out of chemo, we die. That's breast cancer.

  • aram
    aram Member Posts: 320
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    I just wanted to add many of us in this community, specially the younger ones, have had perfect health before getting the cancer news. Usually good health means oncologists have more options to 'cure' early stage cancer. But something I have learnt so far is that even in the most favorable cases oncologists are very careful with their wording of the prognosis, always emphasizing on how each cancer is different, and how it might respond to treatment differently.

    Chemo is not fun, as someone going through it right now, I wish I would have never needed it. But I am content that my health has allowed me to get one of the harshest treatments possible for early stage cancer. Does it mean I will definitely not have a recurrence in the future? no. But at least I know I have done everything humanly possible to extend my life.